Different Cultures of Care

What is particularly confusing to families and young people with chronic illnesses are the two contrasting cultures and systems of health care: the pediatric and adult health care systems (3). As in many aspects of the young person's life, there are times the young person wants to be treated like a child and other times when he/she wants to be treated like an adult. Thus the young person is faced with two different approaches to health care and needs guidance to navigate the two conflicting systems (41-43). Table 3 outlines some of the major differences between the two systems. The different possibilities and timing for moving to the adult-oriented systems must be discussed with the young person and family so the young person can be an integral part to the process. Adult-oriented systems focus on the individual with the rheumatic disease and are rarely structured to provide multidisciplinary care (3). The demands of treating young adults with chronic illnesses may outweigh the benefits in the eyes of some adult health care providers, especially if young adults with rheumatic disease are not prepared by the pediatric system to be their own health advocates, are nonadherent, and/or confused and demanding. In addition, systems of care (availability of case managers, social workers and mental health services) and financial reimbursement practices have not caught up with the numbers of young adults with chronic illnesses. In contrast, pediatric providers focus on the family, and many are

Table 3 Comparison of Pediatric to Adult Health Care Systems

Pediatric Adult

Table 3 Comparison of Pediatric to Adult Health Care Systems

Pediatric Adult

Age-related

Growth and development,

Maintenance/decline:

future focused

optimize the present

Focus

Family

Individual

Approach

Paternalistic, proactive

Collaborative, reactive

Shared decision

With parent

With patient

making

Services

Entitlement

Qualify/eligibility

Nonadherence

>Assistance

>Tolerance

Procedural pain

Lower threshold of active

Higher threshold for active

input

input

Tolerance of

Higher

Lower

immaturity

Coordination with

Greater interface with

Greater interface with

federal systems

education

employment

Care provision

Interdisciplinary

Multidisciplinary

Number of patients

Fewer

Greater

inadequately mobilized to "let go" of their adolescent patients with SHCN (38). The U.S. National Survey of Children with Special Health Care Needs, conducted in 2000-2001 among 4332 households of adolescents aged 14 to 17 years, found that only one out of two pediatric health care providers had discussed transition issues with families, and only one out of six had discussed and developed a plan for addressing those needs (44). Similar results have been reported in Australia (45) and the United Kingdom (46).

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